Tired but doing ok!

I haven't blogged for a few days as I have been feeling quite tired and not quite right, so didn't want to alarm anyone. Thankfully I seem to be feeling better today so am feeling more positive again. It really just started when I got back from Newcastle and I was finding it harder to get up in the morning - the last few weeks before that I have been up and about at 7am, although in retrospect that was probably more abnormal! I also was finding it harder to walk Seb as my limbs just felt very achey and heavy and everything seemed like a bit of an effort. I have been worrying that this is a sign of more rejection, however I do feel better today and I have no other symptoms such as breathlessness or temperature. I suspect it was just a backlash from my busy weekend at the wedding followed by the trip to Newcastle. I keep forgetting that I am still only 9 weeks post surgery and have a lot of stamina still to build. I also keep forgetting that it is normal for people to feel tired sometimes, and was reassured when my friend told me that when she woke the other morning her first thought was about when she could get back into her bed that night, lol. So, my duracell bunny impression over the past few weeks was quite possibly steroid fuelled and as my steoirds have been gradually reduced, my body is just trying to readjust and get back to some degree of normality.

Despite feeling tired I have still managed to keep myself busy. I have however been trying to avoid shops as this inevitebly ends in spending again. Andrew had a dream the other night that he had a hole in his wallet and all his money kept falling out - I don't think you have to be an expert to work out where that came from! I have instead been doing more baking and cooking (see, i am saving money doing this!). So far this week I have made a rhubarb sponge, 2 rhubarb tarts (someone at Andrews work gave him rhubarb), 4 fruits loaves and am currently experimenting with a double mix of flapjacks. Funnily enough I seem to have put on about 2 kilos according to my own scales, so am nearly at my target weight. This might mean I have to cut down on the lattes and home baking *sigh* . Although to be fair, eating 8 flapjacks a day probably is excessive by anyone's standards ;-) I have also been trying different soups for my lunch and made butternut squash soup the other day, which was very nice. I have also been experimenting with dinners so Andrew is never quite sure what he is coming home to. It's a bit of a hit or a miss really, depending on what random herbs etc I have added. I think its the only way to learn though and at least I am trying. The only issue I really have is with safety - I probably shouldn't be allowed to use knives unsupervised. I currently have plasters on 3 different fingers due to cooking related 'incident's'. I think the term my mum likes to use is "hash bash". I need to learn to slow down...

The weekend has been quiet for me, as Andrew and my dad are building the greenhouse. In between the deluges of rain they are making good progress and we might even have time this year to grow some veg ( if we buy some plants already brought on). I'm looking forward to experimenting with that. Andrew has also been shovelling the slate chips so the rockery is nearly finished - I will post a photo of the final article at some point.

Seb is doing fine and still enjoying all his extra walks, although has come to expect them now. We had the interesting task of introducing him to another dog yesterday. Andrew was walking his friends dog while they were at a wedding, so we decided I would meet him on neutral territory with Seb to see how they got on. They have met twice before with little success - the first time I came home with Seb and the other dog, Alfie was in our house. Alfie barked his head off, and Seb was scared so ran behind my legs. He then moved into the hallway and would throw out a bark before quickly retreating backwards! The next time Seb was already in the house and Alfie came into the hallway - Seb went into territorial mode and after climbing on the stairs to gain some height, he barked and barked until Alfie had to leave. This time we got on much better on neutral ground. Seb was quite unsure at first but when we started walking together he did follow on ok, although Seb had to walk behind Alfie so that he could keep an eye on him at all times :-) He then tried his casual look where he just pretends he hasn't even noticed there is another dog. Everything was going really well until we got to our house and there was no way Seb was letting Alfie anywhere near the front door! Walking together was progress though, so would be worth trying again. I think it would be nice for Seb to have a doggie friend, even if he does consider himself to be human...

(p.s Just a message for Peter who left me a comment - sorry couldn't see an email/blog to reply to! I realise about the relationship between reflux and chronic rejection and am taking part in a study - measuring ph and relating to biopsy results. If I have significant reflux I will be offered a fundoplication surgery, so I will be interested to see my results from this. With regards the sinuses, I do daily saline washes - it does really help. I did offer up the theory that damage to my vagus nerve was causing the high heart rate, but the doctor thought this was unlikely. I still think its the most plausible explanation although I do also notice that tacrolimus can cause high heart rate and it may be this. Anyway just wanted to answer those queries - thanks for reading the blog and leaving a comment! :-)

Outpatient Clinic

I am home! They didn't keep me!

We travelled down yesterday afternoon and spent the night at Pat's (mums friend) before heading to the clinic for 7.15 am this morning. We thought we were nice and early but there was already a queue of people waiting! You have to take a ticket when you arrive, so that you get taken in order - it's a very busy clinic and the relatives often get sent to sit elsewhere as there are never enough chairs. The first port of call is blood tests, which have to be taken early so you can then take your anti rejection drugs. Unfortunately my veins didn't want to play ball today and after a few attempts the first nurse gave up and I had to wait on the more experienced nurse to have a go. Another few failed attempts later and I was told to sit with my hands in a basin of hot water to make the veins come up. Luckily this did help and I finally parted with some blood. I have to phone tomorrow for the results but I'm sure they will be fine.

Next it was round to lung function and I was disappointed when on the first attempt I blew exactly the same as last time (75%) when I had the rejection. However after another attempt I got it up to 79% which sounds much better :-) I am still chasing the elusive 80% + which would put me within the bracket for a 'normal' person. It's a target for next time. I then went round to x-ray and since no one commented otherwise, I assume it was fine.

I also had to get an ECG today because my heart rate was a quite fast (12o at rest) and it has been like this since I got my transplant. It was always fast before due to poor lungs and chronic infection, but it should have come back to normal by now. The ECG was just to check that the rhythm was normal, which it was.

We had all this done by 9.30am, so just had to hang about for the next 2 hours waiting to be seen by the doctor. It is quite boring I must admit, but I did have a book to keep me busy. We also bumped into a lady we knew from my old children's hospital and she has had her transplant for 15 years, which was so encouraging to hear!

We finally saw the doctor about 11.30am and I'm sure he wasn't amused when I pulled out my list of 'things' I wanted to ask about! I was concerned about the heart rate and he did think it was odd, but wanted to discuss it with the consultant after clinic. It's not really anything to worry about but they can use drugs to slow it down if it is bothering me. It does bother me at night as I can feel it thumping in my chest as I try to get to sleep - however the drugs to slow the heart down (beta blockers) may also make me tired and I don't want that. We will discuss it at my next appointment.

I also explained that I had been coughing a bit lately and could feel and hear some mucus in my chest - this was worrying me because I had this during the last rejection. He said it could still be due to the healing process and wasn't too worried in light of the fact my lung function was up, and I was otherwise feeling ok. They cannot rule out rejection at this stage but they would not do another bronchoscopy so soon after the last one, so there is nothing else to be done at the moment. If I start to feel otherwise unwell I can contact them but I am due back in 3 weeks for my 12 week bronchoscopy anyway so I will be getting checked out soon enough. I will just have to be prepared for a potential stay at my next visit and if all is well it will be a bonus!

I also have been suffering from terrible sinus pain lately, which is quite annoying to say the least. I had major problems with this pre-transplant but at the time it was the least of my worries - now its really bothering me because I feel so well otherwise. I am still taking all the strong painkillers for my wound and this is hardly touching the sinus pain. The doctor said I have to be referred back to the ENT (previously I was too ill for further sinus surgery so was discharged from the clinic) in case there is anything else they can do. The main concern is my sinus infections causing infection in the new lungs, especially since my sinuses harbour all my old CF bugs. I have already phoned my CF team and they are going to refer me now so that we can get the ball rolling.

My final complaint was acid reflux which seems to have got worse since the transplant. Apparently this is quite common and is due to interference with nerves and side effects of medication. I am on high doses of medication for this anyway so not much else can be done. I am still taking part in a study looking at acid reflux post transplant and will be getting more tests in a few weeks to look at this, so I will mention it then. Maybe I should cut down on the coffee - that's bad for reflux. Let's be realistic though - that's just not going to happen ;-)

Otherwise they were really pleased with me - lung function up, weight stable, sats 99%, blood pressure normal and chest sounded good, so I can't ask for much more than that! Gold star for me :-)

The Wedding

Ardanaiseig Hotel

I had a wonderful weekend at my friends wedding and I was so pleased that I was able to make it. We travelled up to the hotel on Friday afternoon - the wedding was in an old country house overlooking Loch Awe and it certainly was a beautiful setting. I had left my packing until Friday morning and I cannot begin to tell you how much easier this was compared to before the transplant. The last time I had to pack a few months ago I ended up in tears because I was just so breathless trying to gather all my belongings, not to mention the stress of trying to pack and remember all the medications, oxygen, overnight feeds etc. It really put me off going anywhere because the effort and stress involved almost negated the benefits of getting away. This time it was so easy and apart from my medications I had nothing else to worry about. What a great feeling!

The wedding itself was fairly intimate with around 40 guests, so the whole hotel was booked out for the weekend. Arriving on the Friday was really good in this respect as it allowed the guests to mingle and meet each other before the big day. We had a relaxed afternoon with coffee and scones in the drawing room before we all gathered again for a BBQ in the evening. I know I am not supposed to eat BBQ food, but not too worry because the chef prepared me a special plate with the meat well done so I wasn't taking any risks!

On the Saturday we had all morning to do our own thing so myself and Andrew took a long walk around the hotel grounds, gardens and down to the loch. The grounds were lovely with lots of little paths leading into the woodland, so we had a lovely time just exploring the area. We had some lunch before we got ourselves ready for the ceremony, which due to a fortunate change in weather, was to be held outside by the loch.

Out Exploring

Andrew made me pose for this!

The ceremony itself was lovely - we were all gathered in what I can best describe as a small stone amphitheatre which overlooked the loch. A harpist played as the bride arrived - looking absolutely stunning in a almost mediaeval style dress (I would post a photo but would need to ask for permission first!) The mother of the groom read out a poem she had written for the occasion which was very fitting. After the ceremony we gathered back at the hotel for a champagne reception while the bride and groom had photographs taken.

Loch Awe (view from hotel room)

The meal was amazing - sea bass and scallops for started followed by venison as the main, all of which were beautiful. I polished off all my courses including the large slice of sticky toffee pudding. Andrew says he has never seen me eat so much! The speeches were all very good and plenty of humour kept us amused - I even got a special mention from the brides dad to say they were pleased I could make it - it took me a second to realise they were talking about me, and I was really touched.

After the meal in true Scottish tradition there was a ceilidh band. For those familiar with ceilidh dancing you will know it can be quite energetic to say the least, so I had to be careful because of my wound. I did however manage to get up for one of the more sedate dances, which makes another first since my transplant. I can't even remember when I last danced - it might even had been at my own wedding almost 4 years ago. I have a few more weddings to attend later in the year and I'm sure by that time I will be glued to the dance floor :-)

My new dress
(which makes me look even smaller than normal!)

We had a nice breakfast this morning before heading back home. I would like to say we have been relaxing but Andrew ended up outside shovelling slate chips and I was unpacking, then repacking for Newcastle tomorrow - no rest for the wicked. I am organised now though, and myself and mum will head off about lunch time tomorrow so we miss the traffic. Clinic is on Tuesday morning so pleased keep everything crossed I get a good report. I am more prepared for an unexpected stay in light of what happened last time, but I do hope we will be heading back up the road on Tuesday afternoon. I will report back as soon as I can :-)

The art of shopping....again

I thought I would blog today as I am going away tomorrow for the wedding and then on Monday I am travelling down to Newcastle as I have an outpatient appointment on Tuesday morning. I am hoping for a good report and fingers crossed they find no reason to keep me this time. The only thing worrying me is the fact my chest sounded a bit rattly yesterday, and this was one of the only signs I had during the last period of rejection. I am however otherwise feeling well and have no temperature or other worrying signs, so hopefully it's nothing to be concerned about. It is really hard not to over analyse these things though and it can't help but play on my mind. I would be really upset to have another episode of rejection so soon after the first but I will just have to wait and see how I am over the coming days and what my lung function and x-ray are like on Tuesday. I will be due another bronchoscopy in about a month so I'm sure if they are at all concerned they would do that earlier.

Otherwise all is well and I am really looking forward to my friends wedding this weekend. We are staying at the hotel for both the Friday and Saturday as there is a BBQ on the Friday night and then the wedding on the Saturday. The hotel is in beautiful surroundings so hopefully we will get some nice weather! Seb is going to his Granny's for the weekend so he will probably be worried I am leaving him again. He is like my shadow at the moment, following me around the house and trying to get as many walks out of me as possible. He has perfected 'the stare' which he uses when he wants either a walk or a biscuit. It's quite intense - I must try and get a photo of him doing it :-)

I have to confess to some more shopping - but in my defence it was the Debenhams half price sale so it would have been foolish not to go ;-) I got a lovely dress for the wedding which I was really pleased about as I normally have great difficulty getting dresses - mostly because I am between sizes and also because anything that zipped up the back made me feel like I couldn't breathe. Of course I had to get matching shoes but they were my bargain of the week - £35 reduced to £13.50!! I do like a bargain :-) Another couple of tops might have found their way into my basket but I did make sure I got a bigger size so I have room to expand. We were there for hours and when I got home it's the first time I have felt really tired since I got home - shopping should be a sport.

After all that shopping my legs were really achey and I have now developed a new problem - numbness and pins and needles round my ankle. It's the same side as I had the foot pain on so I guess it is probably related. Unfortunately walking makes it worse but I really want to keep up with the walking to improve my fitness. Any advice or ideas from my medic friends is very welcome - please leave a comment!

I probably wont post until I come back from Newcastle, unless I have time on Monday. I will update with the outcome of my clinic appointment once I am home - fingers crossed its all good news.

Random update

I am continuing to get stronger by the day and slowly but surely am starting to get some fitness back. Don't get me wrong, my legs still ache even when walking on the flat, but it is gradually getting easier. I am taking Seb out twice a day for 20-25 minutes, which I think is quite good even by a 'normal' persons standards! At the weekend we went for a long walk at the country park and poor Seb nearly keeled over at the end - he kept just lying down if we paused for a moment and once we got home he was unconscious for the rest of the day. With those tiny legs he isn't really built for distance walking. The good news is that my foot has been fine since I got my new trainers, although the last two days I have had sore knees!! I'm not sure if its CF related joint pain which I suffer from occasionally, or if its just the extra strain I am putting them under. I suspect the latter, which should improve as my leg muscles get stronger and can support my knees better. I will probably be complaining about my hips by the next blog.

I went home on Sunday for Fathers Day, which was really nice as that's the first time I have been home since my transplant and for the first time in ages we could park at the front of the house and I could walk up the steps (Andrew used to drop me round the back as I couldn't manage the stairs). We had a nice dinner and I managed to catch up with my aunt and uncle, two of my cousins and my next door neighbour (as well as my dad obviously!) It was great seeing everyone and I'm sure they would have been pleasantly surprised by how well I look :-)

The slate for our rockery didn't arrive last week so Andrew was spared the task of moving it over the weekend. He did continue with the garden bench repair though, so I did manage to keep him busy. We need a bit of metal to support the middle of the bench, as the original piece is broken. My dad however is currently fashioning a replacement piece for us using some piece of metal he had in his 'stores' - anyone who knows my dad will understand that he ALWAYS has 'something that will do the job' hidden away in his garage, workshop, hut, basement....he has many hiding places ;-)

Worryingly I seem to be turning into an amalgamation of my mum and dad. Like my dad I have been getting up at the crack of dawn (7am most mornings) and like my mum I have continued to with the baking and cooking. It's quite scary really. I did have a baking disaster at the weekend when I forgot to put sugar in the fruit loaves but the birds have been enjoying it since. I have also been trying out various recipes that use the herbs we have bought (I think we have every herb that the garden centre sold!). The mint plant was taking over so yesterday I made pea and mint soup. It sounds a bit funny but it was actually really nice and I would make it again. I have also discovered that I shouldn't be allowed to use sharp instruments as so far, this week, I have cut myself three times - with a knife, my razor and the hand blender. I have been going through plasters at some rate. Just as well I'm not a chef.

Seb is still enjoying the new me, and I have become his new favourite person - I'm sure the novelty will soon wear off. We decided to give him a bath last night (not sure when he last had one as I was to breathless to help and it's a two man operation). He was very good and just stood there looking a bit pathetic. I decided as a treat for behaving he could have a tripe stick afterwards. Well that was the worst idea I've had in a while - he took the tripe stick and proceeded to roll about on top of it until he was sure that he smelt like tripe all over! I couldn't believe it - all that effort giving him a bath and now he smells like tripe. You live and learn.

Healthwise, everything seems to be on track. The blood sugars are improving with bigger doses of insulin, my weight is slowly creeping up and my chest feels great. I have been getting problems with my sinuses again, which is really disappointing but I am trying to do nasal washes everyday to help this. I used to have a wee machine for this but I am paranoid it has bugs growing in it, so instead have bought something called a 'neti pot' or 'rhino horn', which is basically like a wee plastic teapot that you fill with warm salty water and pour into your nostril. If you tip your head correctly the water flows in one side and out the other (it doesn't go down your throat) and it's supposed to be really good for keeping sinuses clear. My ENT recommended a similar thing years ago, so its not as daft as it sounds and I am hoping it will keep the sinus pain at a manageable level. The only other health thing that is bothering me is the side effects of the steroids, as my face is starting to get the puffy hamster cheeks! I was complaining about this at the weekend when mum helpful said 'well it doesn't look too bad when your hair is over your face'. I'm sure that's not exactly how she meant it to come out! I'm hoping when my steroid dose is lower this will get better, although I suspect I'm stuck with it for a while. I suppose there is a price to pay and I would rather have a fat face and lungs that work so I have to keep things in perspective. I don't have to like it though!

Some random squirrels ....

Shopping

I seem to have been spending a lot of money this week. I'm really just making up for lost time, but I think the sooner I get back to work the better ;-) It started with a trip to Tiso's earlier this week to get myself some decent walking trainers. My foot was still giving me a lot of bother and I didn't want to risk doing myself a longer term injury. I took advice from the nice man in the shop and tried on several pairs before settling on the most expensive ones. Obviously. They have been much better for walking in though and my foot is really improving now. My legs still get really sore walking but I guess it's going to take several months at least to build up my muscles - considering it took them at least two years to deteriorate as much as they did. My lungs however are coping so well, and I do feel much less breathless than I did before the high dose steroids. I don't know if this means the rejection was impacting on my lung function, or whether I am just finding things easier as the new lungs settle down more. Either way, it all seems to be going in the right direction.

Yesterday I dragged mum to the shops as I had a gift voucher which was about to expire - calling for an emergency shopping trip. We went to an outdoor shopping centre so it would be easier to avoid crowds of people, but the shops were quiet anyway so it wasn't a problem. I didn't really want to buy any new clothes at this stage as I don't know what weight I will stabilise at (still putting a bit on just now). I did however manage to purchase two pairs of shoes and some nice beaded jewellery. I successfully spent all my vouchers (..and some) and really enjoyed my first shopping trip! The last time I was at the shops was before Christmas, and mum took me in the wheelchair. At the time I thought it was quite a distance we had covered, but yesterday when I was walking I realised it wasn't very far at all. Funny how quickly your perspective on things can change. It was so great to be able to wander around without getting tired and breathless, or trying to tell mum which direction to push me in the chair (and getting stuck between clothes rails etc). It also meant that mum could look at things too, instead of having to worry about me. I could try things on if I wanted, where are I had got to the stage of just buying things and hoping they would fit, as it made me far to breathless getting changed. I am looking forward to a wee spree when my weight is settled...I better start saving now!

I did something really amazing yesterday - I RAN!! Ok, it was for about 10 seconds and my legs nearly seized up, but I did it! I don't think I am meant to be running about at this stage (too much pressure through the wound) but I was walking Seb round the playing fields and he kept stopping to sniff, which gets really annoying - so the only way you can get him going is to start running, and then he flies along after you. I have seen Andrew do this many times, but its something I obviously would never have done before - but yesterday I just thought 'why not?!' and why not indeed. I don't think I will be taking up running mind you, but it was just the fact that the impossible is now possible. It's hard to believe sometimes :-)

The garden plans are coming along nicely, and we have now ordered tons of slate for the rockery and a greenhouse. I think Andrew is going to be busy for the rest of the summer. Although I have to be careful with soil, I should be ok to potter about in the greenhouse and am looking forward to learning about about what plants and veg I can grow. I sound very middle aged I think - I must keep a check on that!

I will leave you with some recent bird photos...

Coal tit

Chaffinch

Blue tit

Keeping Busy

Well, I had quite a busy weekend buzzing about and not really resting :-) I had Andrew up early on Saturday again, so we could take Seb back up to the country park, which he absolutely loves. We did the same route as last time, but the other way round. Unfortunately there was a lot more walking uphill this way, so my wee legs did suffer but the lungs coped remarkably well. I just can't explain how wonderful it is to be able to walk again....just taking Seb for a walk along the road makes me feel so happy inside! Having poor health for so long and then being given this second chance really does make you appreciate the smaller things in life and I hope I never lose sight of that.

I have also been doing more baking - this time scones and fruit loaves. Courtesy of all this high calorie food I seem to have put some weight on! Hopefully this will continue and I will be at my target weight in no time - then I will probably be worrying about piling the pounds on. I have also been doing a lot of the cooking, which I have not really been doing over the past year. Even something as simple as putting things in the oven seemed like a mammoth task. I actually thought I didn't enjoy cooking and was not looking forward to it post transplant. However I now realise that it was more to do with the fact I found it so exhausting, coupled with the fact I NEVER felt hungry, so couldn't really care less what we had for dinner. I would rarely finish my dinner and eating was a huge chore, as well as being something that made me breathless. Now my appetite is slowly returning and I am starting to enjoy food again, so I actually don't mind cooking and would even go as far as saying I quite enjoy it. I have even been experimenting with the herbs we bought for the garden, although at this stage it's very much trial and error. I have no clue what I am doing, but at least it sounds good ;-)

Yesterday I went to the supermarket for the first time (in about a year). We had to go at 9am though, so it wasn't busy as I still have to avoid crowds. It was weird being able to move about and not hang onto the trolley, which is what I would normally do - in fact the last time I went to the supermarket I had the oxygen cylinder in the trolley so I could push it about. How things have changed! I must admit that I still hate food shopping and plan to continue doing it online, but it was nice to at least have a choice about going and not leaving it all to Andrew. I'm sure there will be a great many 'firsts' in the coming months and I am enjoying each one of them.

Seb has been enjoying all the walks but is now expecting a lot more from me. He doesn't like when I am moving around the house and not paying him any attention. When I was baking yesterday he insisted on sitting right in the middle of the kitchen, so that I had to continually walk round him. Then he moved to the front door and sat there looking up at his lead, as if to tell me a walk was in order. Later on I decided to have a shower and left Seb curled up in his basket. As I was getting dressed I heard an intent scratching on the bathroom door. I opened the door and Seb was standing there looking at me, before he quickly dived into the bathroom, grabbed my slipper and ran off. I think we could call that attention seeking behaviour! He has however been busy most of the weekend with the giant bone I got him. He can hardly carry it but has insisted on taking it around with him, even out into the garden and back into the house. At one point he even went to sleep with the bone safely tucked under his paws...it's quite cute in a strange sort of way.

My energy levels have been a bit better over the last couple of days - probably helped by not drinking coffee after dinner, which always stops me getting to sleep at a normal hour. You would think I would have learnt by now. I have been up bright and early the past few mornings and am really not sure what to do with all this extra time! Mum is still coming through most days to keep me out of trouble and help with all the housework that I am not allowed to do just now (shame). It will be easier when I am allowed into crowded places though, because then we can get out and about a bit more. I've had a friend over yesterday and it was so good to catch up and not worry about getting breathless or tired and be able to just relax and enjoy the chat. I think I could get used to a life of lunching and meeting for coffee :-)

The peg tube removal has continued to be a great success and I have had no problems at all since I took it out. Unfortunately my weight still appears to be drifting downwards, so some hard action may be required. I asked the GP to prescribe me some high calories drinks which I will try and take every day and have set myself the deadline of my next clinic appointment (2 1/2 weeks away) to put on some weight. If I haven't by then I will probably resort to the overnight NG feeding for a while because I really can't afford to let things slide at this stage. I have however still been baking quite a lot, and did manage to devour an entire tray of flapjacks over 2 days. They were rather good if I do say so myself :-) The blood sugars are still a bit random but this will settle as my dose of steroids comes down in the next few weeks, so I'm sure this will also help with the weight gain.

The good news is that my foot is a bit better, although it still quite sore to walk on. My mums friend is a physio (hello Irene!) and has given me some advice and exercises I can do, so hopefully that will settle down soon. I am just taking Seb for two shorter walks a day so that I don't put too much strain on it. Seb appears very happy with this arrangement, and in fact was so tired last night he refused to go out with Andrew. Fussy wee thing.

Otherwise, I seem to be getting on really well and gradually building up my stamina. I did give myself a fright this morning when I checked my temperature (which I have to do twice daily) and found it significantly raised, which is a warning sign of infection or rejection. I then realised that I had just finished my coffee and my mouth was still hot! I double checked with the good old fashioned underarm mercury thermometer and my temperature was absolutely fine. What a dafty.

Well my friend is coming over for lunch, so I am away to make some soup. My mum will be so proud...

Trying to take it easy..

I've been feeling quite tired the past few days, but suspect it's just the comparison with how much energy IV steroids give you. Also add the fact I really can't sit back and relax and feel like I should be doing something all the time. I haven't watched any TV since I have been home because I just can't stay still long enough and my mind is constantly whirring and I seem to be constantly pottering around the house, without realising how much energy this uses up. I felt very much like this after my false alarm as well, so it's really like my body and mind has been in high gear for the past 3 months. I am now making the concerted effort to calm down and give my self a chance to heal. Hopefully the weather will pick up soon and I can sit in the garden and read (not lift heavy watering cans).

I did do a little painting at the weekend when the expected hot weather did not materialise. The only problem I found was that my tremor (side effect of anti rejections) became much worse when I was painting, which made intricate detail much harder. Hopefully this will settle down soon, or I will just have to resort to painting giant canvases using industrial sized paintbrushes. Could prove interesting.

I have continued to walk Seb every day, although finding it really variable in difficulty despite doing the same route. I am walking for about 20 minutes, although that does include a great deal of stopping to allow Seb to sniff every tree and lamp post. I do have a tendency to worry whenever I find it hard going because I am aware that I didn't pick up the subtlety of the acute rejection last week so am now a little hyper vigilant for any signs. I think I just have to accept that some days it will be harder, depending on what else I have been doing, how much sleep I've had and how fast Seb decided to walk! I did do a lovely long walk (about 40minutes) at the country park on Sunday morning - dragging Andrew out of bed and arriving at the park just after 9am. He says he preferred it when I liked a long lie at the weekend. It was a lovely sunny morning though, so would have been a shame to miss out. Seb was absolutely exhilarated by the experience - he was diving about, running at all the dogs and generally behaving like a dog that had never seen the outside world before. Needless to say it was all a bit much for him and he spent the rest of the day fast asleep ..but very happy. Unfortunately since this walk I have developed a really sore foot - pain in my heel shooting down the sole of my foot. My self diagnosis is Plantar Fasciitis, which basically means I have strained the fibrous band of tissue that runs along the sole of your foot. One of the commonest causes is doing activity you are not used to, which sounds pretty much spot on. I have bought wee cushion things for the heel of my trainers but they aren't really helping and from what I understand you should really rest the foot but this is kind of difficult when I am meant to be exercising! I will just keep my fingers crossed that it eases up soon, because I really am hobbling like an old woman.

Me at country park

On a cheery note, I had the great pleasure of removing my peg tube at the weekend. The pain disappeared instantly when I removed the tube, and I have had no pain at all from it since! It also has not been leaking as I thought it would and appears to be nearly closed over already. It does however look like I now have two belly buttons which is quite amusing, in a strange sort of way. The only problem is that I still haven't put any weight on, and in fact when I weighed myself this morning I appear to have lost a kilo. I really don't want to resort to NG feeding at this stage, so plan to get a supply of the high calorie supplement drinks to see if those help. I am eating ok (although appetite not great) but I do wonder if the period of rejection has been on reason that I haven't gained weight and also the fact the high dose steroids have sent my blood sugars haywire again. I have been baking myself lots of goodies and trying to drink lots of full fat milk, so it's just a case of perseverance and I'm sure I will get there.

In response to my question and answer post, Emmie was asking me how Seb has been acting since my transplant. He was pleased to see my home, which did surprise me. I am used to the cold shoulder treatment when I have been away, but maybe he knew this time it was different. At first he was really quite suspicious and confused by the fact I kept moving around the house instead of just sitting on the sofa and he followed me around for a few days, wanting to keep an eye on what I was doing and generally being quite unsettled. He was also rather overexcited every time I took him for walk, as it was so novel. He has however adapted very quickly and is now expecting a walk and harassing me to do so. He comes and sits and gives me 'the stare', sometimes pawing my foot or just standing at the front door indicating he would like to go out somewhere. It is difficult to ignore him! He is also now fine about me moving around the house and doesn't really pay much attention to what I am doing, unless he sees me putting my trainers on and thinks he is going for a walk. My trainers have velcro on them, which he can actually hear from the garden!! He comes bombing into the house whenever he hears the velcro, so I have to try and do it really quietly if I'm not taking him out. He is a funny dog.

Well, I am off to sit in the garden now, as it looks nice and sunny. I wonder how long I can sit still for...

Me and Seb pretending its sunny enough to sit out (note how seb has own chair!)

TRANSPLANT - QUESTION AND ANSWER!

OK, here are some of the questions I have been asked...and some I know you want to ask but don't know how to (be warned - it's long!)

Do I still have Cystic Fibrosis?

The lungs that I now have are genetically different so they DO NOT have the CF gene and will never develop CF.

CF however is a multi organ disease, so I still have CF in the rest of my body - most of the effects are due to the sticky mucus associated with CF. This affects mainly the pancreas - so I need enzymes to digest my food, take vitamins that I cannot otherwise absorb and have CF related diabetes. It also affects the gut, causing cramps and blockages at times and also acid reflux, so I take medication for these problems. I also have osteoporosis (thinning of the bones) related to CF - this doesn't cause me noticeable problems and I just have to take some medication to keep my bones strong. The mucus in my sinuses is still sticky and harbouring various bugs, so I will still be prone to my usual bouts of sinusitis and I also occasionally suffer from CF related joint pain - however this was mostly during infections so I am hoping that will not be a problem now. People with CF can also have liver problems however I luckily have NO problems in this area. I will continue to see my local CF team for these issues, but won't need to see them nearly as much as pre transplant.

As you can see CF is quite a complex condition and certainly not just a 'lung disease'. However I have always been mostly affected by the lung component and compared to other people with CF am relatively lucky in the other areas. To not have CF lungs anymore will make a huge difference to my quality of life, and is something I have only dreamt of before.

Can I still get a chest infection?

Yes, I can still get a chest infection like any non- CF person, and will be at slightly greater risk due to my immunosuppression - but not because there is anything wrong with my lungs. The main issue in CF transplants is that you still harbour your old bugs in the sinuses and upper airway (where they attached the new lungs). This means that there is always a risk of infecting the new lungs with bacteria I previously carried. However this will not have the same effect as it did in CF lungs, because I don't have the thick mucus which provided the ideal breeding ground. I will continue to take nebulised antibiotics twice a day to try and prevent reinfection but may need oral or IV antibiotics in future if I did grow any bugs in the new lungs. I don't fully know the long term implications of this, but understand that it can be fairly common and will be tackled if it arises so I will not worry about that for the time being.


What was it like to breathe after the transplant? Did it feel deeper?

When I initially woke up it did not feel any different - because of the pain preventing deep breathing and the new lungs needing time to settle in. The feeling of restriction around my chest has only just started to lift now (5 weeks post transplant) and I now feel like I can breathe deeply. This is most noticeable when exercising, because I previously felt 'air hungry' like I just couldn't get enough air into my lungs, where as when I get breathless I am breathing deep long breaths and can recover quickly. Someone also asked if my lungs felt different because they were not full of mucus - the answer is yes! Part of the reason however is that the nerves to the lungs have been cut, so I actually have no/little feedback from my lungs and do not feel when there is mucus, unless it is in my main airway (which is still my own, with intact nerve supply). I therefore am advised to do some deep breathing every day and cough to make sure there is no mucus lurking. It does however feel amazing to have a clear chest and not have physio to do - it is so much easier to sleep without all the coughing, and I don't have to worry about clearing my chest every day, which was a major task, especially towards the end of my time on the list, when it was exhausting and felt never ending I could have done physio all day and still not cleared my chest - it was a big task. It's a lovely feeling to have a clear chest and possibly the best bit of the transplant so far!

How long does a transplant last?

Unfortunately a transplant is not a cure but its aim is to increase life expectancy and improve quality of life. The general statistics quoted are that 80% survive the first year, and 50% survive 5 years. However, Newcastle showed me unpublished data two years ago at my assessment where they had taken only the CF patients statistics and the data showed 80-90% 1 year survival, 70% 5 year survival and 50% 10 year survival. CF patients probably do better because they are used to drug regimes so comply with anti-rejection medications and also because they are younger, so therefore otherwise fitter than the average transplant patient. Also to note, is that the data must be at least 10 years old, so survival data on transplants today will hopefully be much better. I have heard of people doing well 15 years and I certainly aim to top that! If you compare this to the expected 50% two year survival quoted for people placed on the transplant list and the fact only 50% of people waiting actually get a transplant, then the odds are now in my favour :-)

Can you get a second transplant?

It is possible for some people to get a second transplant if the need arises - but very rare. The information I was given said that medical issues arising from the original surgery will often prevent further transplantation. It is something that can however be evaluated if need be, but would be a last resort and not something I need concern myself with at the moment.

Why is life expectancy still reduced?

One of the most common reasons for transplant failure is people not taking their anti-rejection medications properly. Hard to believe I know! With all the alarms I have set on my mobile phone, there is no chance I will miss any doses. In the first year the biggest risk is from infection and acute rejection, the latter actually being easier to treat. The risk of infection is always present so to try and prevent this I am on long term antibiotics and anti-virals. After 6 months, there becomes a risk of chronic rejection where the lungs become scarred and lung function starts to fall - this is a poorly understood process but some treatments are available to help, although not cure.

The other reasons for reduced life expectancy arise mainly from the effects of anti-rejection medications on the rest of the body - they are tough on the kidneys and can cause renal failure (it is possible to get a kidney transplant and I know people who have), an increased risk of certain cancers and the ongoing risk of some unusual infections. There is no way of predicting whether any particular person will develop problems, so you just have to stay vigilant to any signs and symptoms, contact the transplant team for advice and keep your fingers crossed that you don't encounter many, if any of these problem. Obviously I have had one episode of acute rejection, which is almost to be expected and I may have more. So far, I have not encountered any other issues and hope to keep it this way.

Although this list may sound a bit scary (and I apologise to any pre-transplant readers) it is something I have to contend with and might explain why I still get myself a bit worried from time to time. It's really like having a different, and quite unpredictable illness to deal with. However the other option of not having a transplant only had one possible outcome - continued deterioration and a much reduced life expectancy. With transplant I gain much needed quality of life and the chance to actually LIVE my life.

Can you have children after a transplant?

Yes, some people can and Newcastle have a few people who have had children successfully. It is not advised in the first few years. and there is some data to suggest that it can increase risk of rejection early on especially if you have had previous episodes. Some of the drugs could also affect the unborn child, so it is something that has to be discussed with the transplant team. Another consideration would be the risk of passing on the CF gene - 50% if your partner is a carrier (which can be tested for). This however is a personal issue which I won't go into on a blog.

What do I need to avoid after a transplant?

Most of the main restrictions are in the first 3 months and are mainly aimed at reducing risk of infection. In the longer term this still applies, but the rules are not quite a strict. Regarding food, I have to treat myself like a pregnant woman - no soft cheese, pate, raw fish, rare meats - basically anything with higher risk of food poisoning because this would affect the absorption of my anti rejection drugs, as, unfortunately, does too much alcohol! It is however allowed in moderation (whatever you take that to mean;-)) You also have to be careful digging in soil, compost bins etc due to bacteria in the soil and always wear gloves if gardening. I was also told not to use showers running off large water tanks, such as found in large hotels or hospitals, because stagnant water carries a risk of certain bacteria, and to always wear high factor sun cream, even in this country, to reduce risk of skin cancer. The rule of avoiding people with colds or other infections is long term, although difficult to completely adhere to. It is however all about balance, and common sense should prevail.

What am I most looking forward to in the coming months?

I am most looking forward to getting out and about with Seb (and Andrew of course!) - which I have already started doing. I am looking forward to taking back control of my life; taking back on all the responsibilities I passed to others but can now do for myself. The simple joy of hanging up the washing :-) I am looking forward to catching up with friends and knowing I will be well enough to enjoy this, to plan holidays and know I will be able to go on them and to generally regain some semblance of a social life. Towards the end of the year I really hope I can think about getting back to work, something I have really missed in the past year. In essence I am just looking forward to life...just everyday life! Just so many possibilities and so many dreams to chase.....


P.s any other questions just post me a comment or sign the guest book privately :-)